Tuesday, March 31, 2009

The Lingo

There is a steep learning curve when you are suddenly thrust into being a parent of a child with special needs. One aspect of this has been learning the lingo that is accepted in this community.

Today is "Spread the Word to End the Word" Day. The word: "Retard"

So, I'm spreading the word.

Please, don't EVER use the R word - it's old and it's hurtful. Instead, use mentally/intellectually/emotionally disabled or challenged.

A couple of other things I've learned. Instead of saying Nate is a Downs child or Down Syndrome child, a better way is to say he is a child with Down Syndrome. Down Syndrome does not define who he is (although I may feel like it does at this point), but is a part of his make-up. (A very old and ugly term used for people with Down Syndrome is Mongoloid - yuck!!!)

And when describing Cody, the accepted term is "typical" versus "normal".

So, I beg you....help your families and friends to begin to use terminology that is more sensitive so that when Nate is older, he won't have to hear those words.


Monday, March 30, 2009

Hearing Test #4

As many of you know, we've had a hard time getting a read on what is really going on with Nathan's hearing. He didn't pass the test in the hospital, so 2 weeks later we went to an audiologist for a follow-up. In that test, the left ear passed and the right didn't. We went back again at 7 weeks and it appeared neither ear was passing and he may have permanent hearing loss in both ears and need a hearing aid. So, for the past 6 weeks, we've been expecting to have to deal with the hearing aid on top of the other challenges Nate will face.

BUT that's not the case.

Today, Bob took Nate to his 4th hearing appointment and both ears passed in the normal range! Praise God!!!

The reason this has been so tough is he has VERY small ear canals (which is common in children with DS). His hearing may actually be even better than they tested today. He's been congested for quite a while so some fluid and gunk is stuck in the middle ear. So, we'll go to an ENT doctor and get his ears cleaned out (this will likely be something we'll have to do often since his ear canals are so small - his right is actually about half the size of the left).

We will need to continue having his ears checked each year, so prayers for his hearing are appreciated. Clear hearing is so important in speech development, so we're hoping his hearing will stay as they are or even get better.


Friday, March 27, 2009

Better Today

It's Friday night and I'm exhausted. As I sit here pumping one last time for the day, I reflect on how much better I feel today than I did at the beginning of the week. Today I was able to appreciate the sweetness and beauty of our Nathan. I took many pictures and had some great snuggle time with him. He is such a sweet little guy and I am appreciating that today.

I'm going to try really hard to live in the now as much as possible. Yes, it's necessary for me to look ahead some to make sure we're getting the care Nate needs in the time he needs it, but I do have the tendency to look much farther ahead than necessary. Here are some pictures I've taken in the last couple of days. Nate is starting to smile more, has found his hands, is starting to suck his thumb and cooing a lot at his little toys in his play gym.l It's hard to believe he's already 3 months old.

Monday, March 23, 2009


I'm feeling very sad and overwhelmed tonight. I just have had a sinking feeling all day that I am missing something. I feel like I'm terribly behind in Nate's therapies and care. I'm doing the things the early intervention people have told me to do, but I just know there is more. I've been reading about these programs (neurodevelpment programs) out there that do an intense assessment and set up an aggressive program for us to follow to set Nate up for the greatest success. Of course, these are not covered by insurance and are very expensive. So, I need to spend every moment searching online and reading books to try to make sure I'm doing everything possible.

I barely have energy for Cody right now, so I have that guilt piling up on top of the "not-doing-enough-for-Nate" guilt.

I'm sad....very sad.



When we found out we were having a 2nd boy, I must admit I was a bit disappointed at first. We were pretty sure 2 kids was going to be our max, so my dream of having a girl was quickly slipping away. But, after just a short period of adjusting to the idea, I was very happy for Cody to be gaining a brother. Both Bob and I basically grew up as only children (I have half-siblings who are much younger than I) and felt strongly we wanted Cody to have a sibling - it seemed to us that giving him a brother would be a huge gift.
But now our picture is so much different than we imagined. The relationship Cody and Nathan will have is not what I had expected. Cody will likely feel a big responsibility for his brother and could eventually even need to care for him. They will not relate to each other in the ways typical brothers do. But, I also know each of their lives will be enriched greatly by the other. I hope Cody will learn a depth of compassion from being the big brother to Nathan. And I hope Nathan will learn to acheive more than expected because of Cody's encouragement.

No, this is not the picture I had in my mind, but I'm hopeful we'll see the beauty in it as it develops.


Thursday, March 19, 2009

Good News

We got some good news today! We learned that the cause of Nathan's DS is random and not hereditary (about 5% of cases are hereditary, or caused by translocation). So, that means we are not carriers nor is Cody. Very good news! So, if having another child is in our future, we have about a 1 in 100 chance of having another child with DS versus a 1 in 2 chance - big difference.

Wednesday, March 18, 2009


It was not long ago that I would look at parents with special needs children and think, "I'm so glad that's not me". And during my pregnancies with both boys, I often expressed fear of having a child with Down Syndrome by saying, "I just don't think I could handle that. I honestly don't know what I'd do".

Well here I am....I've been one of those parents now for almost 3 months and now I know I can and will continue to handle this with as much grace and strength as I can find. Now I know the answer of how I would handle being a parent of a child with Down Syndrome - I lean heavily on my faith, family and friends. In those first couple of weeks, I had absolutely no strength of my own. There were many times I cried so hard that I'd fall into Bob's arms and could barely stand on my own. I spent much of those first weeks on my knees crying to God, asking him "why" and begging for strength and peace. I relied on phone messages, emails and cards from friends and family. The first 2 weeks were awful....really awful.

But they were also the best 2 weeks of my life. I felt a communion with God I'd never felt before - a closeness I never imagined. Each morning, as I dragged myself out of bed, stumbled down the stairs and fell to my knees beside our red couch, God led me to places in the Bible that gave me strength and courage. Scripture like:
"So do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isa 41:10
"God is our refuge and strength, an ever-present help in trouble." Psa 46:1
"With God, all things are possible." Matthew 19:26
and so many more....

After the first 2 weeks, the shock began to wear off and I began to sink into our new life. Each day I have a time of sadness - some are passing thoughts, some are hours of grieving, but I know now that I have the strength and the relationships to get me through.

I am so aware now of how blessed I am to have such amazing people in my life and am trying desperately to not take that for granted.


Monday, March 16, 2009

Waiting for a smile

Nate is 10 weeks old and I'm still waiting for a smile. He has smiled at Bob and a couple of others, but not me. I sat and smiled at him for a long time today...and nothing. I wonder if he sees through me, if he sees the concern in my eyes, if he knows I'm forcing myself to smile at him. With Cody, it was so different - he was a really tough newborn, but I still enjoyed just staring at him and smiling. Nate is the easiest newborn I could imagine, but the challenges of our future together don't allow the smiles to come as naturally.

I just wish he knew that if he'd just give me one smile, he'd see a REAL smile from me.


Friday, March 13, 2009

Feeling Raw

I woke up feeling pretty emotionally raw today. After a long day yesterday, both Bob and I were wearing our hearts on our sleeves last night and had a long talk about how we're REALLY doing. On a day to day basis, I feel like life is pretty normal. We have a toddler who is a ton of fun and discovering so much each day and a newborn who I usually feel guilty about because he's so easy.

But there is so much more.

There are so many questions....
*Why couldn't we have just had two typical sons?
*Why don't I see any other children with Down Syndrome when we're out and about?
*Will Nate be able to hear?
*How in the world are we going to pay for all of these medical bills?
*When Nate is an adult, will he speak well or will he speak like a 2 year old?
*Why do 90% of people who find out they are having a child with DS end up terminating the pregnancy? And of the 10% who have the child, 80% give them up for adoption.
*Will the stimulus plan affect early intervention? Will there be more or fewer services for us in the near future.
*Will Nate live with us for the rest of our lives?
*Will all of our vacation time and money be spent going to Down Syndrome conferences?

These are only a few of the questions that run through my mind each day.

Nate is waking up from his nap now - sometimes I want to just ignore him and pretend he never arrived, while other times I want to run to his rescue.

today I'm running....


Wednesday, March 11, 2009

Name Change

Most of you know this by now, but we wanted to put this in the blog as a reminder of the reasoning and process we went through regarding our little guy's name.

After about a month of his life, we changed Braylon's name to Nathan. This was a tough decision for us, but there are 2 very good reasons. First, if he has challenges with speech, he may not be able to pronounce Braylon clearly and since many have not heard the name, they may end up coming up with something else. You can imagine the frustration this could cause. The second, and just as important, reason is that we feel we need a name with meaning. Nathan means, "Gift from God". We want our son to know that is how we view him and we also need to be reminded in the challenging times ahead that he is our Gift.

Tuesday, March 10, 2009


So, here's the update:

Nate - He continues to be very easy. He sleeps a ton and is a good eater. He cries only when he's really upset and is sleeping through the night. We still don't know the prognosis of his hearing, but I feel the last test that showed he has mild hearing loss in both ears is probably pretty accurate. He doesn't respond to sound much unless it's very loud. We have an appt on the 18th with a pediatric ENT doctor and then another Audiology appt on the 30th - then we will likely need to get him fitted for a hearing aid and get him going on that ASAP. We have been having weekly visits at the house with early intervention. We're learning different ways to encourage physical and cognitive development - the meetings are helpful, but feel a bit overwhelming sometimes too.

Cody - He's doing much better. We were really having a hard time over the last 4 months of him hitting other kids without any reason. We actually had the children's pastor from our church come over to the house last week to talk about his behavior and ideas of how to deal with it...somehow though, it seems to have gotten better in the last week, so I'm very thankful for that. Cody seems to be doing better with Nate and is becoming a great little helper.

Bob - Work is going well and he continues to give everything he has to be a great dad and husband. He is beginning to develop a lot of great friendships and getting involved at church. He is going to play the drums at church for the first time this weekend and he and another guy from church are organizing a men's softball team. I'm really excited for him to have some outlets he enjoys!

Me - I'm adjusting to being a mom of 2. I'm getting into a better rhythm and enjoying the boys more. I am doing 2 Beth Moore Studies (Patriarchs and Esther) and am loving those (even though I don't usually make it through all of the homework). I went back to teaching Baby Boot Camp last week and it went well. I'm only scheduled to teach 1/wk, but taught 3x last week due to others being sick. A huge prayer answered is that a friend of mine from childhood who lives here in West Linn asked me if I would teach an early morning boot camp here if she got some people together. She just asked me last night and I told her I would need at least 8 ppl to get started - she emailed me tonight and she already has 6 interested. I'm really excited about this as I love teaching, but just couldn't figure out how to find the time/energy to market and get a crew together. We'll likely start at the end of April/early May.

Overall, we're doing pretty well. Each day is filled with mixed emotions. Most of the time I don't think much about Nate having Down Syndrome, but when I do it hits pretty hard. I still get sad and wonder why this happened to us. It's just hard to believe this journey is for life. We went to a dinner for parents with children with Down Syndrome on Friday night and it was both good and bad. There were about 40 people there. It was great to meet more people and recognize that we're not alone, but also difficult. We talked with one man whose son is 11 and his vocabulary is about the same as Cody's - that's really tough to swallow. We are pretty certain Nate will be fine physically, but the cognitive/communication piece is what we're most concerned about - we just won't know for a long time.

All we can do is trust that God knows our hearts and knows what's best for us.